The Great Escape

Today I got thinking about how I actually cope with nephrotic syndrome on a daily basis, don't get me wrong it's not like you ever forget its there- constantly taking meds and working out how I'm going to deal with being due to take my Tac in the middle of a seminar don't really put it to the back of me mind. Despite all the rigmarole that comes from living with something like this there is times that I do feel like a normal 20 year old and honestly its refreshing its so easy for this to take over your life but sometimes you have to take a step back and just be you.

For me it's sometimes quite easy to hide that I suffer from a constant invisible illness and I look the most normal I have in years (not as hamster faced from the pred!) but also starting uni last year allowed me a whole new fresh start, no one knew my business and I could pick and choose the people I trusted to confide in about what I was going through. Not that I want to hide the fight I've been through, I'm proud of myself- but sometimes it's nice to walk into a seminar room and just think that most people don't know anything about my rubbish kidneys and it allows me to feel normal for little while. Which is sometimes all you need for an hour to help you get back on track.  

For me escapism is something I use to cope with the everyday struggles, its probably similar for most suffers, Being an english lit student books are obviously a main source of relaxation, but I also find creative writing is a really helpful way to get out all the bottled up emotions that come with being a neph patient! (starting this blog has been a labour of love for me and a major outlet for all my issues) I just think that escaping from the crazy existence for a moment can help no end, wether its doing something creative or playing a sport. I've also just taken up yoga and thats held with my anxiety so much, it takes my mind off everything for two hours a week as well as helping to keep my body active- I can't recommend it enough to anyone who needs a break.

I guess what I want to say is just look after yourself as much as you can, Living with nephrotic syndrome takes its toll on all of us wether a sufferer or a carer and just by giving yourself a little time to just be you and not totally controlled by what we go through is what you all deserve.

Spending your life in waiting rooms

Hello all, this is bit of a random blog today, but the idea came to me while sat in a hospital waiting room looking at all the bored faces and then I started to think that as neph patients we do tend to spend a hell of a lot of time waiting round for our various appointments. Don't get me wrong i'm not complaining I know how busy doctors are, but with a lot of eye appointments at the hospital and the opticians, not to mention kidney check ups I honestly feel like I've hardly been out of a waiting room in the last few weeks.


I mean I'm 20 years old so waiting isn't such a difficult task for me, but I have to hand it too the parents of young kids especially those on steroids that managed to keep their kid entertained, it bothers me however when people don't understand that kids want to be playful even when in a hospital- these children are going through as much as any other patient in there and we should give them respect too.

In my previous blog I talked about my eye problems and due to this I have spent far more time than I'd care to admit in the JPH eye department and although the staff are fab you end up spending an awful lot of time waiting about for different test and eye drops to take effect and even though I'm big enough too look after myself dad still comes along with me for support, so a big thanks to him for spending his Saturday morning in a waiting room; which is enough to drive anyone slightly mad (picture to show the madness that developed!).

I've added some pictures different times and different scenarios of my time in waiting rooms (id like to add my phone was on airplane mode and please excuse the snapchat filter and focus on the state of my pupils!) which I think sum up what its like to live life with an invisible illness, when a lot of people ask you why your their as you look far to young and healthy to be at a nephrology clinic. I also hope that some will make you chuckle at my experience of the eye clinic. But wether its waiting for doctors, prescriptions, opticians or a ring back from your nephrologist: having nephrotic syndrome or living with someone who does tends to give you the patience of a saint when it comes to waiting around.